Many years ago, an online friend of mine was part of a disabled people’s ministry that explored what it meant to be disabled. She wanted to get me involved too, but at that point, the ministry was closing down, so she started her own discussion group. The first question we got was to introduce ourselves without mentioning our disabilities. I don’t know whether I did this with my last post, but I don’t want to do things over again. The second question was to describe your limitations. We could mention diagnoses, but the focus was on how disability limited us. I am now trying to answer this question in this post.

My first disability is blindness from retinopathy of prematurity. My vision is measured as light perception only. Technically, this means i can see the eye doctor’s flashlight when it’s brought into my visual field but I cannot tell what direction it comes from. This commonly leads to the misconception that people whose vision is measured as light perception only, are essentially completely blind. In truth, I can orient to light – just not the eye doctor’s flashlight. I can visually locate windows and see whether a light is on or off. With that last one, I do often need to check twice to be sure and I often find it easier to memorize the position of the switch than to depend on my vision.

Then it gets hard. I used to have a diagnosis of autism, but since that was removed, I now have to describe my limitations without depending on a catch-all label. Let me try. I have sensory processing difficulties. I am oversensitive to sounds and textures. With regards to taste, I am a sensory seeker, in that I crave spicy food. I can also be a seeker in the vestibular sense. I used to love to swing and when the movement therapist at my old institution had a trampoline set up, I was over the moon.

I may also have auditory processing issues. I have trouble understanding speech sometimes, especially in a crowded place. I haven’t had a hearing test in forever, so can’t be sure that it’s processing and not my hearing itself. Sometimes though, I do hear something, ask the other person to repeat it and then before they repeat themselves, I process what was said.

I also have social difficulties. I can keep a reasonably normal-sounding conversation but it takes me a lot of energy. I have trouble with reciprocity, in that soetimes all I do is listen and sometimes all I do is talk. I can’t do group conversations, because I get overwhelmed.

I have mild communication issues too. Sometimes, when anxious or overwhelmed, I go mute or stutter or have trouble finding the right words. I remember going mute in high school too, but not sure whether I had these issues before that. It could be anxiety, since I also have that. My psychologist is considering diagnosing me with generalized anxiety disorder, which basically means you worry to an extreme degree about all sorts of things. There are also additional symptoms, like difficulty concentrating, physical tension, etc.

I have cognitive issues too. This may sound stupid, because I have a high IQ. Maybe executive dysfunction is a better word. I appear lazy sometimes, because I get easily overwhelmed by relatively complex tasks and then end up not doing them at all. I also feel anxiety when people ask me to do things, but when I take the initiative, I feel more confident. I wrote earlier that this could be pathological demand avoidance. However, when for instance my husband asks me to do something, i’m fine with it unless it’s a complex task.

Then I have emotion regulation difficulties. I used to have a diagnosis of borderline personalty disorder, but that can’t co-exist with the brain injury I suffered from a brain bleed and hydrocephalus. I don’t have the relational instability that many people with BPD have. Mostly, my emotions are extreme. In this sense, I relate more to the profile for multiple complex developmental disorder (McDD) than to that for BPD. I have never been psychotic, but I do have some delusion-like thoughts.

Lastly, I have motor difficulties. I saw a physiatrist till I was about eight, but was too young to remember the diagnosis. I have a much weaker left side than right, although I recently found out that my grip strength is equal in both hands. The fact that I use my left hand much less could indicate mild hemineglect (lessened attention to one side of the body, usually left). I also have and have always had a lot weaker muscles than most people. I have however learned to live with that. I mean, what do you need to reach your toes for when in sitting position? I do have significant balance and coordination issues. MY gait is very wobbly. I recently learned that healthy people can climb stairs without even holding onto the railing. In my home, where the staircase has only one railing, I need to hold onto the railing with both hands and wobble sideways.

These are the limitations I can think of now. I have some others, but this post has been long enough. When I feel like it, I will answer the next question I remember, which was about adaptations for coping with your limitations.

Welcome to day six of the A to Z Challenge, in which I focus on autism. Sorry for being a bit late – I have been quite tired lately again.

As I said yesterday, today I will focus on autistic people’s experience and expression of feelings. It is a common yet tragic myth that autistic people do not have feelings at all. Autistics, especially the ones who are very much in their own world or who seem very self-absorbed, are often thought of as not having emotions. The truth is, everyone experiences emotions, we just experience them different from non-autistic people.

An example is the fact that I did not feel particularly sad at any of my grandparents’ funerals. However, I did not have a particularly strong bond with any of them so did not naturally feel sad, and I indeed wasn’t aware of the social requirement of displaying emotion. By the time my maternal grandma died in 2007, I had rationally learned the appropriate emotional response, but none of my family members showed it so I felt a little confused.

I also sometimes will focus on a detail in a situation and respond emotionally to that. For example, when a fellow patient in the psychiatric hospital told us that he had been diagnosed with incurable cancer, I did rationally feel sad for him. However, I ended up laughing out loud when someone used a funny nickname for a nurse. This emotional tesponse to a detail in a situation rather than to the big picture, may be one reason autistic people are accused of lacking empathy.

I for one have very strong feelings, but I do not always identify them correctly. Until I was in my late teens, I used “good” and “bad” only when talking about how I felt. Even now, I mostly register primary emotions – anger, sadness, joy and fear -, and even confuse sadness and anger sometimes.

Some autistic people, like myself, feel very intense emotions. In some, these emotions might spiral out of control so that fear becomes panic and anger becomes rage. This is particularly true of autistic people with a condition called multiple complex developmental disorder. People with this condition also often have thought disorders. For example, they might make illogical leaps in thinking. I do not have this diagnosis, but it is very similar to the combination of autism and borderline personality disorder, which is my diagnosis. For this reason, I will illustrate this problem with a recent example from my own life.

At my husband’s grandfather’s funeral, I did not display much emotion as I didn’t feel particularly attached to the deceased. I must say here that, in the days prior to the funeral, I had turned my phone off for an unrelated reason. In the night following the funeral, the emotions of the funeral caught up with me and I began to think that my father had died and I hadn’t heard my mother’s call about it because my phone had been turned off. At first, this was just a scenario playing in my head, but I rapidly grew very upset at this scenario and had to take some emergency tranquilizer. I also became very angry, which shows the confusion between anger and sadness I mentioned earlier.

In short, autistic people do have emotions, some very intense ones. They however may have trouble identifying their own emotions and expressing them appropriately.

Multiple Comlex Developmental Disorder (McDD) is recognized as a subtype of PDD-NOS in the Netherlands. It is an autism spectrum disorder in which people also suffer from emotion regulation problems and thought disorders. Its proposed criteria according to the Yale Child Study Center are as follows:

Impaired social behavior/sensitivity, similar to that seen in autism, such as:

Social disinterest

Detachment, avoidance of others, or withdrawal

Impaired peer relations

Highly ambivalent attachments

Limited capacity for empathy or understanding what others are thinking or feeling

Affective symptoms, including:

Impaired regulation of feelings

Intense, inappropriate anxiety

Recurrent panic

Emotional lability, without obvious cause

Thought disorder symptoms, such as:

Sudden, irrational intrusions on normal thoughts

Magical thinking

Confusion between reality and fantasy

Delusions such as paranoid thoughts or fantasies of special power

In The Netherlands, slightly different criteria are used. For example, social disinhibition is proposed as a possible symptom in the social impairments category.

In the Dutch Wikipedia, McDD is referred to alternatively as juvenile schizophrenia and juvenile BPD. However, most parent-directed sources highlight the intense anxiety which is at the core of McDD. Psrenting, therefore, needs to be aimed at providing structure and boundaries and helping the child reduce their anxiety and emotional lability. Parents need to refrain from showing too much emotion to prevent the child from absorbing the parent’s emotions.

Children with McDD often experience psychotic symptons or full-blown psychosis in adolescence. The emotion regulation problems become less pronounced as individuals with McDD grow into adults, but social problems an thought diosorders often remain significant. Antipsychotic medications can be used to help reduce psychotic symptoms. Even so, most McDD individuals will need lifelong support.

I do not have a diagnosis of McDD, although I think I may meet its criteria. I remember my parents were asked about thought disorder symptoms and unprovoked emotional outbursts at my first autism assessment, but they said I didn’t have them. In reality, I had a lot of bizarre thoughts as a child and still do have them sometimes, and my parents were confused about the questions on unprovoked outbursts. I have, interestingly, foudn that antipsychotics help more with the emotion regulation problems than with the thought disorder symptoms. This does mean that I suffer in silence soometimes, because I do have strange fears and bizarre thoughts, but am too drugged up to act on them.

Back in 2008, Bev over at Square 8 wrote a post entitled I Am Joe’s Functioning Label. The post struck a chord with me right the first time I read it, and, over the years, it has become more relevant. For those who don’t want to hop over to read the post, it’s about what the label “high-functioning” is perceived to say about an autistic person, and how this impacts the way autistics are treated.

For clartiy’s sake: I am not saying that people with an intellectual disability have it easy. The cuts to care and the accompanying independence doctrine affect them too. What I do mean is that it is often easier to understand why a person with an intellectual disability needs care than if you have a high IQ.

It is often presumed that a person who can do a cognitively challenging task like operate a computer, can also do more basic tasks like brush their teeth. In reality, these skills have nothing to do with each other. Another assumption is that people who know how to perform a task and/or why it’s necessary, can also perform that task. I remember even years before Bev’s post reading on Autistics.org about a woman who was getting ulcers beecause social services presumed that if she knew about hygiene, she must be albe to wash herself.

There are many more assumptions about people labeled high-functioning. Here are a few that are affecting my life.

Because of my functioning label, I am presumed to be safe in traffic. Since starting to learn a tiny route around the building, I am not only allowed to leave the ward alone without any purpose, but am expected to leave the ward if I’m angry.

Because of my functioning label, I am presumed to be able to take care of my personal hygiene without reminders or help. This is in a way somehting I don’t want to change, because the reason I’m not able to perform some skills of personal care is because of sensory issues.

Because of my functioning label, I am presumed to know how to solve problems myself even when anxious or overloaded (my fuctioning label dictates that overload is just an excuse to avoid demands). I am presumed to be able to make my needs known in very specific terms.

Because of my functioning label, I am thought to be able to perform practical skills like making a bed or pouring coffee myself. Ironically, the motor deficits which cause me to be unable to perform these tass, were originally thought to be especially common in Asperger’s Syndrome.

Because of my functioning label, I apparently don’t need a lot of structure. This means I am presumed to be able ot schedule activities without help.

If I get overloaded, my functioning label dictates that it was my own choice and I’m depriving other people of the right to make noise.

If I have a meltdown because my routine is interrupted, again, my functioning label dictates that I’m just spoiled and trying to always get my way.

Because of my functioning label, I am presumed not to engage in aggressive or self-injurious behavior. If I do, it’s obviously because of BPD-related attention-seeking.

Yes, I see that a lot of these assumptions are not just based on my functioning label, but also on my co-occurring diagnosis of BPD. Before I had this diagnosis, not only was I not presumed to be unwilling to act normally, but my autism was presumed not to be as mild as it is now. Hence, an additional diagnosis makes it seem as though I’m less severely affected. Isn’t that ironic? By the way, if instead of Asperger’s and BPD, my diagnosis had been multiple complex developmental disorder (McDD), which is characterized by practically the same symptoms, I would likely have been seen as quite severely autistic.